Aa
RMSF
I had a bump on my side and scratched it without looking, then a blister formed and I went to the Dr. and had explained this. So she had blood work done for RMSF. It came back positive. So she put me on doxcycline 100mg twice a day for two weeks. So after I took that I went back a week later and still came back positive again, now I have to wait two more weeks for more blood work. Not taking anything for it. was not prescribed. Kinda nervous about this.
Best Answer
-- Make an appointment with the doc in Mobile. Decide for yourself if he knows what he's doing.
-- Research the five your friend found on a website.
-- I just searched online for
-- alabama lyme --
and got "About 1,230,000 results".
That's a few. Here are some of what came up in my search.
====================================
Alabama Lyme Disease Association - Lyme Disease ...
www --- alabamalymedisease --- org/
"Alabama Lyme Disease Association, Lyme disease in alabama, chronic lyme disease support, Alabama Lyme disease Association Lyme disease awareness."
====================================
Alabama Lyme Disease - Homewood, Alabama
go to Facebook and look for "AlabamaLymeDisease"
Alabama Lyme Disease, Homewood, Alabama. 1359 likes · 539 talking about this. Alabama Lyme Disease Association seeks to connect those who have...
====================================
Lyme Disease Strikes Home - Alabama Outdoor News
www [dot] aonmag [dot] com/article.php?id=2028&cid=158
An AON writer couldn't figure out why he was so tired and felt terrible. Then he was diagnosed with Lyme disease. Here's his story of recovery and prevention.
====================================
Doctors in Alabama who treat or diagnose Lyme Disease
www.lifescript.com › Doctor-Directory >>
Doctors in Alabama who treat or diagnose Lyme Disease. Select a city.
====================================
Alabama Lyme Disease Association makes donation to aid ...
Feb 6, 2014 - "Too many patients in our state have been told by doctors that Lyme disease does not exist in Alabama and therefore have been left to find help ...
====================================
Alabama Lyme Disease Association by Kevin Wolfe ...
www --- gofundme --- com/Alabama-Lyme-Disease
Jul 26, 2012 - The mission of Alabama Lyme Disease Association is to be the central voice in Alabama in helping to prevent Lyme disease and other ...
====================================
Good luck!
-- Research the five your friend found on a website.
-- I just searched online for
-- alabama lyme --
and got "About 1,230,000 results".
That's a few. Here are some of what came up in my search.
====================================
Alabama Lyme Disease Association - Lyme Disease ...
www --- alabamalymedisease --- org/
"Alabama Lyme Disease Association, Lyme disease in alabama, chronic lyme disease support, Alabama Lyme disease Association Lyme disease awareness."
====================================
Alabama Lyme Disease - Homewood, Alabama
go to Facebook and look for "AlabamaLymeDisease"
Alabama Lyme Disease, Homewood, Alabama. 1359 likes · 539 talking about this. Alabama Lyme Disease Association seeks to connect those who have...
====================================
Lyme Disease Strikes Home - Alabama Outdoor News
www [dot] aonmag [dot] com/article.php?id=2028&cid=158
An AON writer couldn't figure out why he was so tired and felt terrible. Then he was diagnosed with Lyme disease. Here's his story of recovery and prevention.
====================================
Doctors in Alabama who treat or diagnose Lyme Disease
www.lifescript.com › Doctor-Directory >>
Doctors in Alabama who treat or diagnose Lyme Disease. Select a city.
====================================
Alabama Lyme Disease Association makes donation to aid ...
Feb 6, 2014 - "Too many patients in our state have been told by doctors that Lyme disease does not exist in Alabama and therefore have been left to find help ...
====================================
Alabama Lyme Disease Association by Kevin Wolfe ...
www --- gofundme --- com/Alabama-Lyme-Disease
Jul 26, 2012 - The mission of Alabama Lyme Disease Association is to be the central voice in Alabama in helping to prevent Lyme disease and other ...
====================================
Good luck!
I have been saying for months that I need help finding someone in my area of Al/Ga. No one has come forward to suggest anyone. Also, I emailed the address you gave me and no one replied. My doctor is trying to help the only way he knows how. I told him about the experience with my last ID doctor and what all of you have told me. He read all of this doctor's credentials and said he should be able to help me. He is at UAB in Birmingham. At this point, I don't know what else to do. I don't seem to have anyone in my family that understands or willing to help me with this either. I found a LLMD in Mobile that I know the person that is using him and getting better. Then I have 5 on a website that my friend got me on that said the LLMD in Mobile didn't know what he was doing. You see where I am at this point. This is the most frustrating thing I've every been thru.
Ladies,
Not all docs are LLMDs, meaning Lyme specialists who understand things about Lyme and its co-infections that 'regular' docs don't.
From the sound of your comments, you were given doxycycline, which is effective only against Lyme (not any other infections the 'Lyme' bacteria often bring with them) and only in the early stages of Lyme. That is the standard approach for docs who follow the IDSA (Infectious Disease Society of America) guidelines.
The problem is that the standards for diagnosis and treatment set by the IDSA were established some years ago with the purpose of tracking the spread of Lyme disease through the population -- and NOT for diagnosing whether a specific human has Lyme disease.
Also, the IDSA docs don't have much interest in co-infections, which are entirely separate diseases that need different testing and different treatment.
Doxycycline won't work on many or most non-Lyme tickborne infections, and it won't work on Lyme except almost immediatley after the infection .... and many of us do not know when exactly we were infected. And those of us who DID see a tick? It may not have been the first bite -- there could have been other, earlier bites that the body manages to handle but not kill the bacteria, and then when another, later infection occurs, doxycycline won't work on the earlier infection .... just the more recent one.
Won't bore you with more details, but I would without hesitation find a Lyme specialist -- not an infectious disease doc (they are, ironically, often the most clueless MDs when it comes to Lyme and its co-infections). A Lyme specialist can be any kind of doc, and it's his/her viewpoint that matters. There is a huge split in the medical community, and it sounds like the docs you've seen are in the out-of-date portion.
I know, I know, I didn't believe all this when I first heard it either. It took me 20 docs before I found my way to an LLMD, who just happened to be an immunologist by training, but could have been any kind of MD.
Bottom line: I would without hesitation find a Lyme specialist without delay, taking with you copies of the tests already done. What do you have to lose? If you need help finding a so-called 'Lyme-literate MD', let us know. It's not a degree or a diploma: it's a frame of mind.
Let us know how we can help. Don't give up.
Not all docs are LLMDs, meaning Lyme specialists who understand things about Lyme and its co-infections that 'regular' docs don't.
From the sound of your comments, you were given doxycycline, which is effective only against Lyme (not any other infections the 'Lyme' bacteria often bring with them) and only in the early stages of Lyme. That is the standard approach for docs who follow the IDSA (Infectious Disease Society of America) guidelines.
The problem is that the standards for diagnosis and treatment set by the IDSA were established some years ago with the purpose of tracking the spread of Lyme disease through the population -- and NOT for diagnosing whether a specific human has Lyme disease.
Also, the IDSA docs don't have much interest in co-infections, which are entirely separate diseases that need different testing and different treatment.
Doxycycline won't work on many or most non-Lyme tickborne infections, and it won't work on Lyme except almost immediatley after the infection .... and many of us do not know when exactly we were infected. And those of us who DID see a tick? It may not have been the first bite -- there could have been other, earlier bites that the body manages to handle but not kill the bacteria, and then when another, later infection occurs, doxycycline won't work on the earlier infection .... just the more recent one.
Won't bore you with more details, but I would without hesitation find a Lyme specialist -- not an infectious disease doc (they are, ironically, often the most clueless MDs when it comes to Lyme and its co-infections). A Lyme specialist can be any kind of doc, and it's his/her viewpoint that matters. There is a huge split in the medical community, and it sounds like the docs you've seen are in the out-of-date portion.
I know, I know, I didn't believe all this when I first heard it either. It took me 20 docs before I found my way to an LLMD, who just happened to be an immunologist by training, but could have been any kind of MD.
Bottom line: I would without hesitation find a Lyme specialist without delay, taking with you copies of the tests already done. What do you have to lose? If you need help finding a so-called 'Lyme-literate MD', let us know. It's not a degree or a diploma: it's a frame of mind.
Let us know how we can help. Don't give up.
I feel like your doctor is wasting precious time with you. You got diagnosed early enough to be able to get well without too much treatment. I'm like you, I would be looking for another doctor. I went back to my doctor today. He said my levels had not changed any after two rounds of doxy. I don't know if that means anything. Today I asked him about minocycline and he gave me a prescription for it. I have had really bad side effects from doxy. I was told by a family member that her LLMD put her on minocycline after she was having problems with doxy too. Also, he is sending me to another infectious disease dr. I hope he is better than the last one I saw. I am like you, very tired. Also, pressure headaches, anxiety, and just feel awful. Please see another doctor soon, if your doctor doesn't continue to treat you. It is so much harder to get well after left untreated. I wish I could have been diagnosed as soon as you. I showed the bite to my doctor, but he didn't think about a tick bite. I had so many problems prior to this, he never tied it to the bite. Let us hear from you.
Thank You for responding, I am still just really tired all the time, to where I used to have a lot of energy, I am going back one last time, and if I don;t get a good response, I will be finding another doctor, My doctor that I used to have, he would have dug and dug until I was better, but he has retired, it seems like these drs. now just really don't have a clue or don't care one. I'm not sure how to take them these days. :(
I just read an article about a young man in Kansas who was diagnosed with RMSF at least a year after he got it. He was very sick. He spent 4 months on IV Doxy but then relapsed. Then, he took oral Doxy for 8 months.
The short course of Doxy if for someone who just got infected. If RMSF has had time to get entrenched, it requires long term antibiotics, possibly even IV meds.
Testing isn't very useful after treatment has started, as antibodies can remain after an infection is eliminated. A doctor must continue to treat for RMSF as long as there are symptoms. Unresolved infection can cause permanent damage.
Anybody with RMSF whose doctor is denying further treatment while still symptomatic needs to find another, more knowledgeable doctor.
The short course of Doxy if for someone who just got infected. If RMSF has had time to get entrenched, it requires long term antibiotics, possibly even IV meds.
Testing isn't very useful after treatment has started, as antibodies can remain after an infection is eliminated. A doctor must continue to treat for RMSF as long as there are symptoms. Unresolved infection can cause permanent damage.
Anybody with RMSF whose doctor is denying further treatment while still symptomatic needs to find another, more knowledgeable doctor.
PS your profile doesn't say where you are, but if near Chicago, try searching online (I used google) for something like
-- chicago lyme --
but put the name of the nearest city close to you. The links you will get are usually links not to MDs, but to patient support groups, which is good because having a bunch of people out there who are also looking for and finding Lyme docs multiplies the amount of information you will get, and it gives you more choices and better data.
I would find one (or more) of those groups and (if they work like this website we are on now) post a message like 'Need LLMD near [Peoria]' or whatever city you live close enough to get to. Once diagnosed and put on treatment, my doc only wanted to see me once a month, so it's not like the doc has to be next door to you.
One thing about Lyme disease that many docs don't understand is that the 'Lyme' ticks don't carry just Lyme, but can also carry other, separate infections that muddy the diagnostic picture, so it takes an expert to know what to test for (based on your symptoms) and to treat other infections the tick(s) brought with appropriate meds -- doxycycline is the first line of defense in an early Lyme infection and sometimes works against other tickborne infections, but an LLMD will know that is not the end of the inquiry.
And asking a doc if s/he is an LLMD ("Lyme-literate Medical Doctor") is not useful. LLMD is not a degree (like MD) and is not a title. It is ONLY patient slang referring to an MD who understands Lyme's tricks and how to diagnose, treat and defeat them. A Lyme specialist can be any kind of MD -- a general practitioner (GP) or a specialist (like an immunologist or other medical speciality), which is why a term like LLMD is useful to us patients looking for a doc who truly understands how to diagnose and treat Lyme. (I'm going to post this paragraph on the main site, because it's an issue that has come up a lot lately.)
Let us know how we can help -- best wishes!
-- chicago lyme --
but put the name of the nearest city close to you. The links you will get are usually links not to MDs, but to patient support groups, which is good because having a bunch of people out there who are also looking for and finding Lyme docs multiplies the amount of information you will get, and it gives you more choices and better data.
I would find one (or more) of those groups and (if they work like this website we are on now) post a message like 'Need LLMD near [Peoria]' or whatever city you live close enough to get to. Once diagnosed and put on treatment, my doc only wanted to see me once a month, so it's not like the doc has to be next door to you.
One thing about Lyme disease that many docs don't understand is that the 'Lyme' ticks don't carry just Lyme, but can also carry other, separate infections that muddy the diagnostic picture, so it takes an expert to know what to test for (based on your symptoms) and to treat other infections the tick(s) brought with appropriate meds -- doxycycline is the first line of defense in an early Lyme infection and sometimes works against other tickborne infections, but an LLMD will know that is not the end of the inquiry.
And asking a doc if s/he is an LLMD ("Lyme-literate Medical Doctor") is not useful. LLMD is not a degree (like MD) and is not a title. It is ONLY patient slang referring to an MD who understands Lyme's tricks and how to diagnose, treat and defeat them. A Lyme specialist can be any kind of MD -- a general practitioner (GP) or a specialist (like an immunologist or other medical speciality), which is why a term like LLMD is useful to us patients looking for a doc who truly understands how to diagnose and treat Lyme. (I'm going to post this paragraph on the main site, because it's an issue that has come up a lot lately.)
Let us know how we can help -- best wishes!
Did she not give you any more doxy to take during these 4 blood test? I will get results from my 2nd blood test on Tuesday. My doctor is not doing them as close as your doctor. I have no idea why. I did ask him to go ahead and give me two more weeks of doxy because I was still sick.
I remember my doctor telling me in the beginning that he had someone else that tested positive for RMSF. He said they had to take two rounds of doxy. That would probably apply to you, since you went to the doctor right after finding your bite. If she hasn't given you two more weeks of doxy, I would ask her to. If you are like me, you want to go to someone that understands this, but it's not easy to find them.
I really hope you get some answers soon. Believe me, I know how you feel. I have been dealing with this for over a year. I was only diagnosed this June. I want to feel better too.
Keep us posted. Good Luck
I remember my doctor telling me in the beginning that he had someone else that tested positive for RMSF. He said they had to take two rounds of doxy. That would probably apply to you, since you went to the doctor right after finding your bite. If she hasn't given you two more weeks of doxy, I would ask her to. If you are like me, you want to go to someone that understands this, but it's not easy to find them.
I really hope you get some answers soon. Believe me, I know how you feel. I have been dealing with this for over a year. I was only diagnosed this June. I want to feel better too.
Keep us posted. Good Luck
I would see another MD for a second opinion. Tickborne illnesses are complex and often come more than one infection per bug bite, so it takes a wise MD to know what other infections you might have also gotten from the bite. Or perhaps you had another previous bite/infection that your immune system was able to hold down until you got the current bite, and having more than one infection makes all the symptoms more noticeable. Dunno.
Docs seem to think in linear fashion: one bite, one infection. But the ticks don't work that way. Your short bio here doesn't say what part of the country/world you are located in. If you want to share with us what general area you are in ("near Chicago"), someone here might have a doc to recommend.
(We try NOT to post MDs names in the open here, because in some states, docs who treat Lyme aggressively are hauled up before the local/state medical board for 'overtreating' Lyme, since the usual 2-3 weeks of doxycycline often don't cut it. But we can send and receive 'private messages' through this system. More about that later. Don't want to overwhelm you now.
================================
Another approach:
You can email to: ***@**** (or if that gets blocked out, here it is again in a slightly more discrete form):
-- contact [at] ILADS [dot] org --
Tell them where you are and can get to ("near Chicago IL"). ILADS is the main voluntary group for Lyme-specialist MDs.
================================
And one more approach:
You can search for
-- lyme disease Illinois --
for patient groups or websites that focus on local resources.
================================
If this is all too complicated (which it can be when feeling so lousy), ask a friend to help do the search for a local LLMD, using the approaches outlined here.
Hang on! We've all been where you are. Let us know how you do and how we can help.
Docs seem to think in linear fashion: one bite, one infection. But the ticks don't work that way. Your short bio here doesn't say what part of the country/world you are located in. If you want to share with us what general area you are in ("near Chicago"), someone here might have a doc to recommend.
(We try NOT to post MDs names in the open here, because in some states, docs who treat Lyme aggressively are hauled up before the local/state medical board for 'overtreating' Lyme, since the usual 2-3 weeks of doxycycline often don't cut it. But we can send and receive 'private messages' through this system. More about that later. Don't want to overwhelm you now.
================================
Another approach:
You can email to: ***@**** (or if that gets blocked out, here it is again in a slightly more discrete form):
-- contact [at] ILADS [dot] org --
Tell them where you are and can get to ("near Chicago IL"). ILADS is the main voluntary group for Lyme-specialist MDs.
================================
And one more approach:
You can search for
-- lyme disease Illinois --
for patient groups or websites that focus on local resources.
================================
If this is all too complicated (which it can be when feeling so lousy), ask a friend to help do the search for a local LLMD, using the approaches outlined here.
Hang on! We've all been where you are. Let us know how you do and how we can help.
Hope you get better, I just received my 4th blood work results and still testing positive for rmsf. Really getting upset here no energy still and congestion and coughing.
You might want to see another doctor, I am not real happy of mine at this moment. Hope you get better. My sister had gotten lymes diseasee once but she is fully recovered.
I was diagnosed with RMSF too. I haven't seen anyone else on here that has it. They all have lyme. Were you tested for lyme also? Mine came back negative. From all I have been told, that doesn't necessary mean I don't have it. I have the no energy too, but no coughing.
It's a really good thing you were given the doxy so soon after you discovered the tick bite. I didn't receive my treatment for a year. I showed my dr the tick bite, but for some reason, he didn't think of a tick bite. I have been very sick this last year. Hopefully, since you started your treatment so soon, you will make a complete recovery.
I feel your frustration. I've been going thru similar things.
It's a really good thing you were given the doxy so soon after you discovered the tick bite. I didn't receive my treatment for a year. I showed my dr the tick bite, but for some reason, he didn't think of a tick bite. I have been very sick this last year. Hopefully, since you started your treatment so soon, you will make a complete recovery.
I feel your frustration. I've been going thru similar things.
It's good you are keeping an open mind (and a critical view) about how well your doc is handling the situation. Because of the disarray the medical community is in about Lyme, it means there are docs out there who aren't really up to speed for all kinds of reasons, and if one doc isn't working out, then quietly find another and transition over (that's another reason to be sure you get copies of all test results AT the appointment when the tests come back -- so you have a complete set to hand to a new doc if needed).
It's cruel of Mother Nature to make the patient have to manage that aspect of diagnosis and treatment, but that's where it is at the moment. Hang in there! You're doing what I would do. Ask a friend to help -- that's what they are for!
It's cruel of Mother Nature to make the patient have to manage that aspect of diagnosis and treatment, but that's where it is at the moment. Hang in there! You're doing what I would do. Ask a friend to help -- that's what they are for!
Well they did the second blood work and it came back still positive for RMSF. Now I am Waiting for 2 more weeks so they can draw blood again and send it off. I am not taking any med as of now and I think a couple of weeks is just giving what ever it is time to really take me down again. I have no energy, and am coughing alot. Thinking about changing drs. :(
Welcome to MedHelp Lyme --
Sorry to hear about this. What does the doc say?
Sorry to hear about this. What does the doc say?
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It's not uncommon for ticks etc. to carry more than one infection, so maybe there is another one in addition to RMSF. Different infections sometimes need different meds (doxy doesn't work on everything), so maybe the doc is waiting for the new blood work to see what else might be there. That's a good thing, that the doc is taking it seriously, and try not to worry in the meantime.
Let us know what you hear back, okay?